Thursday, September 21 – Tough patients and touch decisions…

Our Schedule for the six weeks that we’re here

The theme of the day seemed to be patients who not only stretched our clinical acumen, but also brought to light the many ethical considerations that encountered virtually every day we are here. Practicing medicine in a resource limited setting, such as FAME and Tanzania, causes one not only to make decisions that are based on the medical information, similar to what we do on a daily basis at home, but also from an ethical standpoint based on so many other factors such as financial and cultural issues that are not always so obvious. Our patients today presented challenges that were in this realm and the decision making that was involved were excellent lessons for everyone.

Jenna and Wajiha delivering their lecture on headaches

As it was Thursday morning, it was again time for an educational lecture at 7:30 am and today was our turn to give it. Wajiha and Jenna had decided that the talk would be on headache, and they would focus on the more common headaches that are seen in clinic – tension-type and migraine – though would also go over “red flags,” those parts of the history that would make one concerned the headache was secondary or being caused by another process and potentially life threatening. As you can imagine, we’ve given many headache lectures over the years, each one perhaps subtly different, but always carrying the same messages and reinforcing the essentials of caring for patients with this incredibly common condition. Given the growth of FAME over the years with new doctors coming often, and the expected turnover of clinicians here (though our retention rate has been amazing over the years), repeating lectures only serves to continually update the staff and further cement the appropriate clinical practices for the neurologic disorders that we see with them.

CT scan of our newborn with HIE

Whitney had been following a newborn here who was having seizures since our arrival, and we had finally decided to obtain a CT scan of the brain as it would affect what our recommendations would be as far as how long to continue the anticonvulsant medications the baby was on. Essentially, if the child had a neonatal bleed and was seizing as a result, then it would mean a longer course of medications prior to discontinuation and possibly consideration of a shunt if they were to develop hydrocephalus. On the other hand, if we were dealing with HIE, or hypoxic-ischemic encephalopathy, then we could taper the medications earlier. We received the images this morning (the scan was actually done the night prior) and the abnormalities seemed to confirm the baby suffered from HIE, meaning that the seizures would likely burn themselves out and there was less of a requirement for long term antiseizure medications. Unfortunately, it also didn’t bode incredibly well for the baby’s prognosis in regarding her development.

The issue of hypoxic-ischemic encephalopathy and neonatal resuscitation has always been a difficult one and something that greatly differentiates pediatric practices between high and low resource regions of the world. The basic fact that there are no ventilators here (or in any other low resource countries) to use if needed is a very practical limitation and the realization that there are no real NICUs (neonatal intensive care unit) here, at least in the same regard as we have them in the US and elsewhere throughout Western World. The other problem here and in other low-resource settings has to do with the social and financial consequences. There are no safety-nets here such as exist elsewhere in the world to assist in the care and support for either families or children in need. A child who is born with severe hypoxic-ischemic encephalopathy will be fully dependent on others and on society for their care indefinitely and a family, perhaps already be unable to provide for their children and themselves, will not have the means to provide for a newborn with such devastating disabilities. That is not to say that they a family would not wish to care for their child, but more so that it is their decision and theirs alone. It is not for the doctors and nurses to make for them, for in doing so, one could commit a family, and the child, to a lifetime of suffering. As I said, these decisions are neither simple nor easy to make, and there are no right or wrong answers. One must just appreciate the gravity of the situation and do what is best in any given circumstance.

Elibariki, LJ, and Nuru with a patient and mom

In a similar vein, another child arrived at clinic for Whitney to see and was brought by their parents. It was a six-month old child whose development had been severely delayed such that it was unclear that they were doing anything at a conscious level, and it was unclear that they could see. In addition, the child’s head was far too large for their age and with a bulging fontanelle, immediately raising concern for the presence of some form of hydrocephalus, whether obstructive or congenital. For babies with hydrocephalus, the only treatment that helps is a shunt, and typically a ventricular-peritoneal shunt in which the fluid is drained into the abdomen and reabsorbed there.

This child was not a straightforward hydrocephalus case though, as his development was severely delayed at best, and we had a significant question as to just how much function they had and exactly what their brain looked like. As it would certainly affect what was boing offered to the family concerning treatment, we recommended that the child have a CT scan so we could feel comfortable in this process. Though what we saw was not completely unexpected given the child’s incredibly poor examination, it was still a shock to see the amount of devastation that was present and, to be totally honest, that the baby had survived as long as it had. Though there was most of the brainstem intact, or at least it seemed so, the remainder of the hemispheres (the cortex of the brain and what makes us think) were virtually non-existent and were replaced by massive porencephalic cysts filled with spinal fluid. With this information now at hand, performing a VP shunt (ventriculoperitoneal shunt) may make the child more comfortable, but it would not improve the child’s function nor change their overall prognosis. This would all, of course, be predicated on whether the family would be able to afford the surgery for the shunt. We will do our best to communicate these rather intricate options to the family and hopefully have a path to follow shortly.

Next up was a patient that we had heard about during morning report and had arrived at FAME the night prior after suffering severe trauma and had a pneumothorax, broken ribs, and abdominal injuries. We were told that they also had numbness in their legs, and the inpatient team wished for us to see the patient in neurologic consultation. When Wajiha went to see the patient, though, it was quickly evident that not only did they have numbness in their legs, but rather they were not moving either of their legs and had an L1 sensory level. A full body CT scan had been completed the night prior and, what it revealed, was that the patient had suffered a complete dislocation of their spine at the T12-L1 level and had likely transected most of their spinal cord. Without the ability to see the soft tissue (i.e., with an MRI scan), we were unable to tell whether there was still some continuity of the cord as he could benefit from high dose steroids if that were the case, but either way, we recommended that he receive them right away to preserve whatever function we could. I sent the images off to Sean Grady at Penn just to get his recommendations in the meantime and the spine surgeons at KCMC (Kilimanjaro Christian Medical Center) were contacted as he will eventually need to have his spine stabilized.

Whitney and Dorcas evaluating a young patient

Meanwhile, lunch today was pilau, one of the more popular noontime meals, though I am admittedly partial to the rice, beans, mchicha, and pili pili that is served five days a week. The East African pilau is quite different from Indian pilau which is made with curry and can be quite spicy while the pilau here is merely rice cooked in a meat broth, mildly seasoned and then with chunks of beef. Adding pili pili (Tanzanian very spicy salsa) to the pilau does make it spicy, but that is done to individual taste.

We had our normal smattering of patients today that included a Parkinson’s disease patient and the requisite epilepsy cases. At the end of the day, though, Wajiha saw a very complex case of a young woman who had suffered left MCA territory infarction several years ago for which we had no records. She had also had heart failure at some point and, even though she didn’t seem to be in failure at the time of our visit, we wanted to look at her echocardiogram to see if there was any reason to have her on anticoagulation. We also sent a slew of laboratory studies looking for other possible causes of her stroke, though in the end, it’s unlikely we will find anything to treat differently and will just leave her on her antiplatelet therapy and a statin as we did find that her LDL was rather high. As we did not have any of her imaging studies and really needed to know whether she had multiple vascular territory infarcts (i.e., was it cardioembolic or not), we decided to obtain a CT scan here at FAME. We were able to determine that the prior stroke was confined solely to the middle cerebral artery territory and, therefore, she did not require any additional treatment.

LJ and Whitney almost home

Thankfully, Turtle (our stretch Land Rover) had arrived earlier in the day from Arusha with its fresh new coat of paint and a number of necessary maintenance repairs having taken place that included a “new” rebuilt engine. Importantly, the refractometer was also in the vehicle, allowing Sehewa to finally take care of his photo ops given that he would be leaving tomorrow and would not be back for several months. Land Rovers are in a constant state of disrepair, not because they are neglected, but rather because they just take constant upkeep to maintain them and to keep them running. One blessing is that they are dirt cheap to repair and maintain here given the number of that remain on the road and are far older than Turtle and Myrtle. For game drives, they are the absolute best and after several years of trying to decide whether to go with Land Cruiser (Toyota) or Land Rover, I chose the latter and have never looked back. They are quite simply beasts on the trail and amazing vehicles that can take whatever is thrown at them. I drove Turtle back to the house from the main parking lot and it was just like meeting up with an old friend.

Turtle and Myrtle parked at home

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